Baby Joseph can go home to die, but without tracheotomy: hospital

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Updated: March 1, 2011 at 10:48 a.m.

LONDON, Ontario, February 28, 2011 (LifeSiteNews.com) - Dying one-year-old Joseph Maraachli, whose parents are entangled in a legal battle after doctors refused to perform a simple procedure that would allow him to die at home, should have had that procedure “a long time ago,” a pioneer in the field of neonatology has told LifeSiteNews.com.

But the physician’s statements came on the same day that the hospital where Joseph is being kept said it is willing to send him home, but with an important catch: they still refuse to perform the tracheostomy that allowed a sibling of Joseph’s who had a similar condition to live another six months at home. Instead they will simply return Joseph home, and then remove his ventilator, after which he will almost certainly die within a matter of minutes.

Alex Schadenberg of the Euthanasia Prevention Coalition, who has been working closely with the family, told LSN that this solution is unacceptable to them. The family’s lawyer, Mark Handelman, said the same to the Canadian Press. But Joseph’s father, Moe Maraachli, later told LSN that while they remain committed to fighting the hospital’s effort to remove the ventilator, how they will respond to the latest offer is not yet completely finalized and they are still discussing it.

“They need to do a tracheostomy,” said Dr. Paul Byrne, an Ohio neonatologist with nearly five decades of experience and a former president of the Catholic Medical Association. “If the baby is stable otherwise, and has a tracheostomy, then the baby can be taken care of at home.”

In a “public information campaign” launched Sunday night, London Health Sciences Centre, where Joseph has been treated since October, defended their refusal to perform the tracheostomy. They called the procedure, which involves inserting a breathing tube through a tiny slit in the throat, “invasive,” and said it is “not a palliative procedure.”

“It is frequently indicated for patients who require a long term breathing machine,” they wrote. “This is not indicated for Baby Joseph because he has a progressive neurodegenerative disease that is fatal.”

This wording was repeated in today’s statement in which the hospital said Joseph could go home to die.

But Dr. Byrne told LifeSiteNews that “there’s no case” when a child is on a ventilator where the tracheostomy wouldn’t be indicated.

The hospital is now asking Ontario’s Office of the Public Guardian to intervene and allow them to take Joseph off his ventilator, after the parents have continued to refuse consent. That office has been unsuccessful in asking other family members to consent instead, and could intervene itself any day.

Dr. Byrne called the attempt to have the state remove Joseph’s ventilator “terrible, absolutely terrible,” and insisted that in his fifty years in neonatology he’s never removed a child’s ventilator. “I’ve never seen a time to turn off a ventilator,” he said. “If a baby has a disease process that’s so bad that they’re going to die, then they die on the ventilator anyway. So you don’t have to stop the ventilator.”

He also criticized the common phrase “life support,” saying, “Life is either there or it’s not there. You don’t have to hold up the life. What we do in medicine are actions ... that support the vital activity of respiration.”

“Assuming doctors can do something to support the vital activities, we ought to do them,” he explained. “And a tracheostomy ought to be done, and the baby ought to continue on the ventilator.”

Though doctors have said Joseph is in a “vegetative state,” Dr. Byrne called it a “made-up term” similar to the notion of “brain death,” which he said was invented “simply to get beating hearts for transplantation.”

Even Joseph’s doctor in London has admitted that the tracheostomy could prolong his life. “A tracheotomy would likely provide for a longer period of life, however, in our view would not result in improvement of well-being and could reduce quality of life,” Dr. Douglas Fraser told the Ontario Consent and Capacity Board in January.

Along with their public information campaign, the hospital announced Sunday that they are considering legal action against unnamed individuals who they say have alleged that doctors might “kill” Joseph or that his death would be a case of euthanasia.

Joseph suffers from a severe neurological disorder, but his specific condition remains undiagnosed. Doctors have given him no chance of recovery, so his parents, Moe Maraachli and Sana Nader, have asked them to perform a tracheostomy which would enable him to breathe on his own, so that they could take him home. Their daughter died from similar complications eight years ago, but in that case doctors performed a tracheostomy and they were able to take her home.

On February 17th, Ontario Superior Court Justice Helen Rady upheld a January verdict from the Consent and Capacity Board of Ontario, which had supported the doctors’ move to take Joseph off life support against his parents’ wishes. The hospital had appeared set to remove Joseph’s life support last Monday, but that got delayed when the family hired expert lawyer Mark Handelman with the financial support of the Euthanasia Prevention Coalition.

Justice Rady’s decision was based on doctors’ testimony that he is in a permanent vegetative state with no brain stem reflex. But the family says that footage released Thursday by LifeSiteNews belies the doctors’ claim. The videos, taken last weekend, show him flailing and reacting to tickling. They also show that his hands have been tied down - a measure the hospital took after Joseph removed the tube from his throat on at least two separate occasions.

The family has been trying to have Joseph transferred to a hospital in the U.S., where they believe he’ll get better care or at least a reassessment, and possibly the tracheostomy they need to bring him home.

In the last couple days, the case has drawn attention from major pro-life and anti-euthanasia groups in the U.S. who hope to find a hospital willing to take over Joseph’s care. Family members of euthanasia victim Terri Schiavo travelled to London last week to advocate for Joseph and Fr. Frank Pavone, national director of the U.S.-based Priests for Life, has pledged to pay for Joseph to be moved to a hospital in the U.S.

Alex Schadenberg, executive director of the Euthanasia Prevention Coalition, warned in a Fox news interview that the court decision facilitates a system where doctors are authorized to force life and death decisions on patients. He has said he believes it is far worse than the “death panels” recently debated in the U.S. as part of the federal health care law.

“It’s the hospitals and the doctors once again usurping their power over the people,” he said. “That’s what’s happening. And they have significant power - they have the money and the courts behind them. It’s absolutely ridiculous.”

Over 12,000 people have rallied behind the parents through the Facebook page “Save baby Joseph”.